All-Party Parliamentary Group on ME send letter to NICE

November 11, 2021

The All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG) have sent a letter to NICE following the publication of the new ME/CFS Guideline. The letter is shown below:

Dear Professor Leng.

Re: The publication of the new NICE Guideline on Myalgic Encephalomyelitis (ME)

We are writing as members of the All-Party Parliamentary Group (APPG) on ME to welcome the new and long-awaited NICE ME guideline.

The new guideline significantly improves upon the previous version published in 2007 as it is based on strong evidence demonstrating that ME is a complex and debilitating physiological disease. We endorse the removal of support for graded exercise therapy (GET) as a treatment for ME within the guideline. This step is widely supported by both scientific research and ME patients who have been steadfast in calling out the harmful effects of GET. With the publication of the updated guideline, the APPG looks forward to seeing the implementation of its recommendations, including the removal of GET from any treatment programmes. While biomedical treatments are being developed, people with ME must be able to benefit from proven symptom management techniques.

We understand that there is a significant knowledge gap amongst medical professionals in relation to the cause and appropriate treatment of ME. The decision made in August to delay publication due to the unwillingness of some professional groups to endorse the new guideline demonstrates this gap. Although we are pleased that the new guideline has finally be published and the good work of the guideline committee upheld, evidently, there is a great need for updated training for healthcare professionals caring for people with ME in addition to a review of current service provision. As an APPG, we look forward to seeing progress being made in this area.

We wish to reiterate the APPG's support for the work of NICE which has achieved major guideline improvements and broad consensus. The new and updated guideline better reflects the lived realities of ME patients, and we believe that this guideline has the potential to be life-changing for people with ME throughout the UK. For that reason, we look forward to seeing its full implementation alongside the development of a more patient-centred approach to ME care.

Kind regards,

Carol Monaghan MP
Andrew Gwynne MP
Cat Smith MP
Stephen Timms MP
Debbie Abrahams MP
Alison Thewliss MP
Margaret Ferrier MP
Edward Davey MP
Ben Lake MP
Dame Diana Johnson MP
Emma Lewell-Buck MP
Angus MacNeil MP

Cc: Dr Paul Chrisp, Dr Peter Barry, Baroness Finlay of Llandaff

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